After over two years on pred following my diagnosis of PMR and GCA I had finally broken the 10mg barrier in March (from a starting base of 60mg) and I was slowly reducing till this week I was down to 7mg per day. I've been looking forward to the day when I can see the side-effects of this nasty medication disappearing (three months ago was told the steroids had given me Type 2 Diabetes) but over the last few weeks my joint and muscle pain in shoulders, hips and knees had returned, together with painful headaches around the temples and eyes and tiredness becoming even more extreme so that I was sleeping the large part of the day if I gave in to the tiredness.
In the end I made the appointment with my GP and today he's told me to go back up to 10mg per day, at the same time he's taken blood to test for inflammation markers.
I'm so down now, I really thought I was on the way to getting over this illness. Will I ever get off the cursed steroids?
Written by
GreyOwl
To view profiles and participate in discussions please or .
I have been on pred for nearly 5 years and, like you are now, have had a flare every single time I got down to 9mg and tried to drop another 1/2mg. Two years ago I had a major flare, worse than at the beginning, almost certainly because I had to be switched to a different sort of pred when I moved here to Italy. However, having changed back to a form of prednisone instead of the methyl prednisolone, I have been able to reduce steadily and am now down to 5mg and starting on the way to 4mg. I'm not sure if this is going to work but I'm having a go with my "dead slow and almost stop" approach to reduction. It was only when I tried that that I have managed to reduce at all without problems.
It is very common to have a GCA flare in the first couple of years. If this is your first you haven't done too badly. I know several ladies who have got off pred after 5 or 6 years despite having had flares like yours on a few occasions. You will get there - just not yet. It is so disappointing and I wish I could give you a hug because I do know how awful you feel.
Under 10mg is when many problems start to appear and lots of people find it a hurdle that takes some getting over. Then 7mg often does the same. I hold on to the fact that, side effects or not, I can function reasonably well, am not in too much pain and I can still see (although my original diagnosis was PMR I had GCA symptoms then and double vision about 3 years ago after an attempt to get below 9mg which sent me back to 15mg. It worked, I didn't have to go any higher).
I'm sure others with a similar history but who have got off pred will be along to polish up the light at the end of the tunnel. The trouble is, they usually don't appear on a forum because they are off pred! Chin up xxxxxx
Hi PMRpro! Thanks for your kind thoughts. I know many people must be worse off than me but I was really hoping I could shake off these steroids as soon as possible. They've made my life, and my moods, complete hell. I have zero stamina and very little energy and, loving gardening and horticulture as I do, it's so frustrating to feel almost helpless. On top of that my dexterity seems to be affected, maybe it's arthritis, and I'm finding myself having to ask for help to open food packets, bottle tops, etc. All in all, it's a long time since I felt happy to be alive. I just feel like a burden to my closest.
I see you now live in Italy (lucky you!). Was your health a factor in your move to a warmer climate?
No - we'd had the flat for a few years, it is big enough for 2 friendly people to live in so himself retired early - couldn't stand the NHS as it was becoming any more, when they stopped his research it took away the fun side! I worked freelance anyway and he started doing consultancy too (he's a scientist). We're in the mountains in the north (nowhere near Chiantishire) with no ex-pats to speak of and about an hour and a half to Innsbruck where he has a mate with whom he does research. Keeps him occupied . Contemporaries have half million quid houses - we have a selection of relatively small/cheap flats which are let to fund retirement. Infinitely preferable we feel! It isn't necessarily warmer - this winter was very mild, but -9C was pretty much standard overnight and around freezing during the day. Normal is minus 15-20C in the winter.
The dexterity is very possibly not the pred but an aspect of PMR - I couldn't do that sort of thing in the 5 years I had PMR and wasn't on pred. It is improving now but still isn't right - we were trying to explain it to some rheumatologists in a research meeting the other day! I also had no energy - it has actually improved with pred eventually. Quite a few people say "the pred does x..." and I have to point out: "PMR can do x too..." I was fairly bad tempered pre-pred too! Quite colourful language - and I'm not alone
I know not being able to do what you used to do hurts desperately but is it possible to do things differently? A few on the other forum were having a gardening discussion the other day. I changed my garden a lot to make it very low maintenance - I can't kneel, nothing to do with PMR and then sold it to come here to a balcony and no plants. OPs!!!!! One lady has a gardener - a young lad - to do the hard work and plays foreman. You should come and visit the other forum pmrandgca.forumup.co.uk/ind...
and join in with the gardeners - loads of photos!
As for being a burden - try contemplating what it would have been like without pred altogether: if it gets your eyes the sight doesn't come back and some 3000 people per year suffer GCA-related partial or total visual loss because it wasn't caught in time. Makes bad moods and weight gain slightly less awful.
GreyOwl, I have been on steroids for 13+ years and will be for life (currently on a maintenance dose of 5mg). PMR/steroids between them stopped my hobby in it's tracks but once I got my head round it all, I found other things to compensate. This may not be the retirement we looked for, but it is a very acceptable replacement.
Acceptance didn't come overnight to say the least of it, and I really don't expect your outcome to be anything like mine (I have T2 diabetes, too but think I would have got it anyway - can't blame Pred for everything) and at one point I found that the longer I stayed at 10mg (like lots of others I got stuck there) the side effects gradually began to disappear even though I wasn't doing anything at all. It isn't the highest of doses and side effects should be pretty minimal at that level in any case. My blood sugar levels have been normal for the last 2 years.
I do hope you get over this hump in the road. I don't think any of us who post on here generally have had a smooth ride, but we have managed to get some of those who have come off steroids to continue posting as it gives those newer ones hope. There are more of those than you might think!
Try to put your disappointment to one side. Positive thinking needed!!! You have done really well to reduce from 60 mg to 10 mg in 2 years. A huge drop! Have a few weeks at 10 mg and then try the slowly slowly approach to reducing. I felt good on 10 mg and once on this, and then slowly reducing lost the fat face and my energy started coming back. Hopefully you will stabilise too. Try the anti inflammatory diet - or at least follow most of it, most of the time. It made me feel better, I lost some weight and it makes you feel as if progress is being made. I have taken 2 years to get from 20 to 4.5mg - having a few pains but trying to stabilise currently on the lower dose. ( pains no way like the ones at the beginning). Your reduction to 10 has been good so don't feel depressed as you are doing so well
I think that having reduced from 60mg to 10mg between months 7 and 12 after diagnosis with no problems and then on 10mg for the next 12 months, I was hoping that when I started the reduction again it would be plain sailing and I would be completely off them by the end of this year. Since the beginning of March I'd dropped to 7mg by this week and I really thought
And feeling so exhausted and tired as I normally do, it doesn't help when people say I look so well. They can't understand how there is anything wrong and I get the feeling they disbelieve me.
What's the anti-inflammatory diet? I'm lactose intolerant, eat no red meat and only a little poultry about three times a year, take no added sugar and avoid processed food and not sure what else I can cut out.
I researched anti-inflammatory foods following diagnosis of PMR and GCA and the following became the mainstays of my diet:
Oily fish 3 times a week (sardines (with bones - good for our bones!), mackerel, salmon, trout); beetroot, avocado, garlic and the herb turmeric added to suitable foods.
Like you, I avoided all processed meats and sugar, but I do eat organic chicken and a small amount of organic beef/lamb.
I also reduced refined carbs: bread (can increase steroid-induced weight gain, white potatoes (substitute with sweet potatoes), parsnips. These foods turn to sugar in our bodies and could add to the risk of steroid-induced diabetes.
I also included lots of diuretic foods, such as asparagus, garlic, fennel and melon to try and offset the risk of steroid-induced fluid retention.
I certainly found that if I veered off this diet, particularly the oily fish it seemed, I would notice increasing pain/stiffness.
A little bit of your post seems to have disappeared (the end of the first paragraph), so I'm not sure whether you might be having problems at the 7mg dose. If so, it could be because you have reached a dose roughly equivalent to the amount of natural steroid (cortisol) that our adrenal glands produce when well, and it is as this stage that they will be trying to re-start that production which has been suppressed by the Pred. Therefore if they're not yet up to speed you will have a shortfall which can result in returning symptoms. If that is the case, then you may have reduced a step too far for the moment. You could try returning to wherever you last felt comfortable and, if things improve, stay there for a few weeks and then just try a 0.5 reduction, perhaps even following a slow tapering regime, trying the new dose on just a couple of days of the week.
I can so understand how frustrating it is especially when it sounds as though you have been following one of the latest trials whereby you remain on 10mgs for a year in the hope of experiencing less flares, but everyone is different and unfortunately what may work for one may not work for another. But take heart from the fact that you have done very well to get down to 7mgs in about 2 years - many of us have taken a lot longer than that. Hopefully a small increase will help to improve your symptoms, including the fatigue.
Thanks for all your advice and I have made notes.I tend to stick to fish, some oily, most days or all-vegetable meals as I try to steer clear of all other meats for ethical reasons. I'm not to enamoured with sweet potatoes although I do take a little. I also have to be careful with some food items because I'm on post-cardiac surgery medication so more to worry about there.
I'm not sure what happened to the end of my first para but I think i was saying that I thought I was well on the way to coming off the steroids completely before the end of the year until these flare-ups have put paid to it.. Guess I'll need to think again on that! I have been getting problems for the last three weeks during which I had dropped, at intervals, from 9 to 7mg this week.
I have to see my GP in two weeks so I guess he'll have his own views on whether and how I should start reducing again from 10mg.
Penny w sent me a copy of the anti inflammatory diet originally ( email her at northkent@pmrgcauk.com) and ask for a copy and some of her recipes. Celtic also follows similar - they both posted on diet matters 8- 9 days ago so have a look.
You sound as if you follow quite a restrictive diet already so adjusting a little more may not be too hard for you and may help you feel better.
Hope your pains go and you stabilise and start to feel better soon
Visit this website pmr-gca-northeast.org.uk, click on Our Stories and read the two by people who have had GCA and one has now been in remission for 5 years and the other for nearly two years.
They are the tip of the iceberg. I can assure you that there is a light at the end of the tunnel, it is just that everyone's tunnel is personal in length.
A drop from 10mg in March to 7mg now is far too much in such a short time. Send a PM with your email address and a reduction plan (devised by Ragnar one of the contributors to Our Stories) and then tweaked after more experience with it - can be sent to you. You might like to look at it and give it a whirl.
Hi greyowl you sound just like me I was doing so well up to last week when I started with all the usual aches and pains that every one tells us about and when you have been pain free for a few months you forget how bad it really is and exactly the same tired to the point of getting up to lay down,I too have GCA from jan 2012,my dose at the moment is 8/5 mg,s will give it to the end of the week before I increase or hopefully stay on 8/5 will let you all know,by the way ankles are swelling with my new medication called Amlodipine 5mg per day for BP,wish they would not keep moving the goal post for BP my 150/80 few years back would have been considered good for a 69year old.
put your feet up whenever you can and if you can manage to put a pillow under the sheets to elevate while sleeping this made a big difference to me,I do hope you feel better soon its just not fair we all are suffering like this but look forward to the summer and hope you have a nice garden to sit in,Kind Regards Anne
"That's interesting Celtic - one of my BP meds is Losartan. Here it is standard to be on a couple of low dose drugs - and I have to say that Losartan plus bisoprolol has posed no problems at all. I don't feel tired (well, no more than PMR manages anyway) and feel well. I did have swollen feet and ankles and had one session of manual lymphatic drainage - within a week all the swelling in my legs had gone and has never some back."
Hi PMRpro, I believe, like you, I'm fine on the Losartan 50mg apart from raised creatinine. It's Diltiazem which is obviously causing my ankle/foot swelling. I guess even if I had manual lymphatic drainage any fluid dispersed would return whilst still on Diltiazem. I'll mention MLD to the consultant next time I see him -- perhaps he'll suggest referring me for a session.....well I can dream!
Hi Anne, loads of people suffer from swollen ankles due to Amlodipine - don't let them increase you to a higher dose if it is suggested but ask them to switch you to another drug. My hubby had severely swollen ankles when they increased it so was put back down to the lower dose with another pill added in. According to my consultant the latest thinking is that it's better to have people on lower doses of 2 or 3 medications rather than on a high dose of one. I came off Amlodipine after two months because of really bad swelling. I was put on another from the same family of drugs and, not surprisingly, I still have some swelling though not as bad. Yet another pill has been added and so far so good, apart from slightly increased creatinine in the blood test - my pharmacist says it's the one he hears the least complaints about.....it's called Losartan.
That's interesting Celtic - one of my BP meds is Losartan. Here it is standard to be on a couple of low dose drugs - and I have to say that Losartan plus bisoprolol has posed no problems at all. I don't feel tired (well, no more than PMR manages anyway) and feel well. I did have swollen feet and ankles and had one session of manual lymphatic drainage - within a week all the swelling in my legs had gone and has never some back.
Thanks Celtic,and you are right he wanted to up the dose to 10mg,s and I said no we will see how this goes first,he did offer me another drug called Ramipril.but have you seen the side effect sheet,so on the pharmacy advice I took my BP at different times of the day and guess what it works well for me it is best to take it after a dog walk so I take the dogs morning and evening,seems to be OK at the moment.thank you all once again for your reply,s Kind Regards to all Anne
Hi again Anne - yes, in spite of my pleas against it I was encouraged to try Ramipril for the second time recently and didn't feel at all well during the month I took it: fleeting head symptoms and nausea. However, that might have something to do with the fact that the first time they tried me on it some 7 years ago, within days I developed the worst ever head pain, nausea/vomiting etc.......diagnosis: GCA! Psychosomatic this time? Maybe. But I wasn't taking any chances.
Good to hear your BP is behaving on the low dose of Amlodipine and long may that continue. Keep walking the dogs!
Hi Girls,this weather is not much good for us,come on PMRpro cheer us up what is it like in Italy to day?have you got plenty of sunshine or are you overcast like us?did you say you are not to far from Innsbruck? you will have the comfort of the hills do they keep the east wind down so you don't get blown off the planet.
Thanks again to Celtic and your self for all the help and advice it is really appreciated.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
. Contemporaries have half million quid houses - we have a selection of relatively small/cheap flats which are let to fund retirement. Infinitely preferable we feel! It isn't necessarily warmer - this winter was very mild, but -9C was pretty much standard overnight and around freezing during the day. Normal is minus 15-20C in the winter. 
Completely at a loss
Bruising and tapering questions . Advice please 
GCA in the Aorta
Suspected flare and following my instincts
